Author: mazels2014

Troubling Misuse of Promising Practice

When a new approach to teaching learners with CVI is suggested, we need to ask ourselves:

  • Does this match our understanding of the unique learner’s visual behaviors?
  • Is there scientific research to support the use of this strategy?
  • If there is no scientific research, is it a “promising practice” that we can carefully try and carefully apply to each unique student’s situation?
  • How do we decide to use this “promising practice”?
  • How do we use it as it was meant to be used?
  • How do we evaluate its effectiveness since not all inventions will be useful for all learners? (I hope the words collect data popped into your mind here!)

Recently I visited a school to consult for a student who was barely using any central vision to access literacy. The TVI had learned about word bubbling in a conference. Word bubbling is a promising practice suggested by Christine Roman in her book Cortical Visual Impairment: Advanced Principles.

This TVI took the app for word bubbling and suggested that all the child’s literacy materials were bubbled.

  • This does not match the student’s visual skills. Central vision use would be essential for this intervention.
  • This is not the suggested practice from the text: Cortical Visual Impairment: Advanced Principles.
  • This was randomly applied with no diagnostic evaluation of the tool as applied to the student.
  • The TVI never partnered with the reading specialist who would be the expert about the teaching of reading. That collaboration would be essential.
  • There was no data on the effectiveness of this strategy for this unique learner.

Here is just one example of a sentence this poor student is now struggling visually recognize:

 

Please:

  • Understand your student’s visual behaviors.
  • Try promising practices with careful consideration of those visual behaviors.
  • Use the strategy as it was meant to be used.
  • Collect data on the effectiveness of your trial. (Baseline data then progress data)
  • Random application of any strategy is as inaccessible as doing nothing..
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Are You Making Your Assessment and Service to Learners with CVI Fun?

First and foremost, our children with CVI are children. Children love predictable games, funny noises, and social interactions. Children like to play the same games over and over again. We can get our goals and objectives accomplished with learners if we understand what makes learners happy and what it is that they deeply enjoy. The parent is the most essential reporter of their child’s preferences. We need to move away from what we think children will like to what the parent knows the child will like. That is the basis for faster, fuller and longer lasting learning.

Some ideas, based on assessment of the child’s visual skills:

Instead of holding materials to gain a child’s visual attention and once they look you move on to another object, create a game that sparks a social, auditory and tactile sequence.

  • “Find the pom pom. It is silver with many shiny streamers”. Once the child looks, wiggle and tickle their arm while making a funny noise.
  • The parent reports that the child likes his/her feet tickled. Present an object that can represent that tickling game. “Here is the symbol for tickling. It is yellow and round like a ball”. Once the child looks, tickle their toes using a funny voice!
  • For literacy, pick a predictable book with a distinctive colored cover. Make sure is enjoyed by the child. Once the child looks, “That is the Farm Animal book with funny sounds. The book is square with a green cover”.

Why? All kids are kids no matter their abilities.

  • Creating fun, predictable interactions with children is the basis of a strong trusting relationship which allows the child to show you optimal skills in all areas. (Another plug for direct service to students with CVI)
  • When interactions and learning are based on what the child likes, the memory of that interaction is solidly stored in the brain.
  • Fun interactions guarantee that the child will be motivated to communicate at the highest possible level. (Expanded Core Curriculum area)
  • Creating visual recognition using these “symbols” for games allows you to build a repertoire of symbols that will be the basis for choice making based on building visual recognition.
  • When you see the way children communicate (large body movements, smiling, raising their arms or vocalizing), you can acknowledge that communication and help the child understand your needs for understanding their communication. “I see a big smile (touch the side of their mouth in an upward motion). When I see that smile I know you want more”. “I see a large body movement. That tells me you like this game”.
  • You can build literacy choices and experiences supported by storyboxes, yet another set of visual opportunities. http://www.pathstoliteracy.org/storybox-ideas-norma-drissel
  • You will have fun too!

Perkins 5th Annual Symposium

The Perkins 5th Annual Symposium this July 11th and 12th, 2019 was a huge success! The first day there were three panels. The second day, workgroups formed to discuss the needs in each topic.

The first panel, Medical and Research, laid out the current state of medical understanding and research about CVI. The panelists lead by Lotfi Merabet, OD, Ph.D., were Sharon Lehman, MD, Barry Kran, OD, FAAO, Terry Schwartz, MD and Corrina Bauer, Ph.D.

The second, Assessment and Promising Practices which I led, featured Matt Tietjen, M.Ed, Sandra Lewis, Ed.D, Tammy Reisman, CAES, Christine Roman-Lantzy, Ph.D.

The third, Family Education and Advocacy, lead by Tracy Evans-Luiselli, Ed.D., featured Rachel Bennett M.Ed., Bobby Silverstein, Esq., Barbara Raimondo, Esq. and Monika Jones, Esq..

Repeated themes shared overwhelmingly throughout the panels:

  • Kids can’t wait. They are in our homes, offices, and schools now in overwhelming numbers. Those numbers will continue to grow in the United States and across the globe.
  • Parents and students are critical partners.
  • Researchers, medical professional, educators and parents need more information about CVI.
  • CVI is complex and needs a team approach for diagnosis, assessment and planned intervention.
  • Individuals with CVI are unique and deserve unique considerations in assessment and interventions.
  • We need more assessment tools and more researched interventions that work for learners with CVI.
  • The infighting about the name: cortical, cerebral or neurological visual impairment is a roadblock to understanding, identification, assessment and service to individuals with CVI. Fighting about the name will impede progress in all areas especially in advocacy at the government level.
  • Together with consensus, we can move this forward. If we are fractured, we will stall efforts for research, assessment, advocacy and service to students.

The overall issues were identified and workgroups formed to tease out details in the four areas of Medical/Research, Assessment and Interventions, Advocacy and the Higher Education training of vision professionals to serve students with CVI.

With Perkins support and commitment, the work will continue from the identified collective wisdom of the workgroups.

Perkins CVI Symposium July 11th and 12th, 2019

Join us for the annual CVI Symposium at Perkins School for the Blind in Massachusetts. This is the first time this will be held off-campus in a conference center and the first time this will be a two day event. It will be very different from previous symposiums. The first day is panel discussions with leaders in the field of CVI. The next day is a working day to more CVI forward. You can attend groups of interest including:

  • Medical and Research working group
  • Assessment working group
  • Higher Education working group
  • Advocacy working group

Find more information here at:

http://www.perkinselearning.org/earn-credits/onsite-training/cvi-symposium

 

Phase III: Child with Visual Recognition Difficulties

My friend is a parent of a child with CVI with visual recognition problems. On the CVI Range, he scores in Phase III (Roman-Lantzy). She constantly describes the impact of CVI on her son that she witnesses every single day. These children with visual recognition problems due to CVI have really, really good central vision use that is consistently used. Because they are looking, people think they have visual access just like we do.

This is her story about a family trip to Montreal. Of course, Omer really doesn’t care for these adventures into noisy, busy and new environments where objects and people are not known and therefore not understood. CVI is an issue of visual recognition after all. He wants to stay in the hotel room that is quiet with few people moving around. He understands and can visually predict the bed, bureau, TV and chairs. He knows the people in the room are his family so that reduces the stress. Because the family understands this difficulty, they picked a quiet restaurant for lunch.

On the table at the quiet restaurant, Omer he saw a glass of room temperature water with bubbles.

 

Omer never saw the bubbles in a glass of water before. A few weeks prior, he had seen and experimented with putting salt into water and drawing on that experience, thought the bubbles were salt. Pretty smart but wrong…

For kids with CVI and visual recognition problems, it takes so long for them to visually process newly seen events and materials. Omer was working so hard to close the gap of information that he missing. He is desperately trying to link previous information to this novel visual target.

Omer never saw the bubbles in a glass of water before. It was his first time seeing it and he was fascinated! He asked his mother to take a picture of it so he could zoom in for a good look and verbal explanation.

I am so proud of Omer’s advocacy! What I do worry about is what is number of times in his day that he encounters items, people and events he doesn’t understand and the we, with perfect vision, forget to make accessible?

Chose Vision for IEP Eligibility

Vision is the primary learning mode for children with perfect vision. Vision gathers information quickly, links previous learning to new learning and links information from all the other senses for a full and complete understanding.

We know that for children with CVI, vision is the primary disability. For children with CVI, their visual impairment impacts all access to all of the general education curriculum. Their visual impairment impact all access to all of the special education curriculum.

Identifying the student with CVI and determining eligibility as “Vision” ensures that a teacher of students with visual impairments is part of the team and that there is consideration of the Expanded Core Curriculum. The Expanded Core Curriculum addresses the Unique Disability-Specific Needs of a child with a visual impairment.

For a child with CVI:

  • Their lack of visual attention and visual recognition limits the effective gathering of information about how the world works.
  • Their lack of visual attention and visual recognition limits the effective gathering of information about how the people in the world behave.
  • Their lack of visual attention and visual recognition impacts their connecting, categorizing and classifying of information.
  • Their lack of visual attention and visual recognition limits their understanding of sound sources.
  • Their lack of visual attention and visual recognition requires direct experiences in natural environments.

The Expanded Core Curriculum includes these 9 areas:

  1. Compensatory skills
  2. Orientation and mobility skills
  3. Social interaction skills
  4. Independent living skills
  5. Recreation and leisure skills
  6. Career education
  7. Use of assistive technology
  8. Sensory efficiency skills
  9. Self-determination skills

This is not an extra curriculum. This is an essential curriculum for the child with visual impairment. These are skills that everyone needs to live and work successfully to their full potential. The critical difference for our children with CVI is ACCESS to these 9 skill area. Children with perfect vision begin their exposure to the Expanded Core Curriculum at birth. Children with CVI must have the same consideration.

Children with and without additional disabilities can have Expanded Core Areas addressed in their programming due to the absence of or reduction of incidental learning.

Children with CVI

  • lack access to all visual information which optimizes all the learning for their peers with perfect vision.
  • lack access to the same number of repeated opportunities for visual information to reinforce concepts which optimizes all learning for their peers with perfect vision.
  • lack access to visual experiences to link new information to old information which optimizes all learning for their peers with perfect vision.
  • lack the ability to access and practice continuously in naturally occurring environments which optimizes all learning for their peers with perfect vision.

CVI is a neurological condition but is manifests in a visual impairment. This visual impairment is the issue for all learning. For the eligibility section of the IEP, chose “Vision” and the primary disability and “Neurological” as the secondary disability.

Bring Vision to the forefront for all learning.

The Neuroscience of Reading

As people suggest methods for our children with CVI to learn to read, I wondered what does the brain need to do in order to learn to read?  I found a local researcher, Maryanne Wolf of Tufts University who wrote extensively about the neuroscience of reading in her book Proust and the Squid.

As it turns out, the brain needs to do quite a lot. It certainly requires a high degree of sustained visual attention, which can be problematic for many of our children with CVI.

Reading requires the whole brain including the occipital lobes, parietal, frontal and temporal lobes. The brain needs activation in both hemispheres and needs the “language areas” of the brain to be engaged and active. There are steps to reading function from decoding to understanding what is read. This reading “thing” is quite complex which is no surprise given how complex the brain is!

When we apply reading methods for our students with CVI, we need to apply methods to the child not decide that all methods work for everyone. We need to be diagnostic. What is working? Why is it working and under what conditions? Is it working at all? What can we do to improve this complex process that includes learning to use vision and to build reading skills?

No one of us serving students with CVI can know everything. We can certainly educate ourselves but will not be experts in everything. We must seek out and collaborate effectively with experts. In this case of reading, we need to partner with reading specialists as we apply any techniques for learning to read.

One size will not fit all because every brain is different and learns differently.

 

 

Judy Endicott: Reading Specialist: CVI

This is a great podcast by a reading specialist putting ideas directly into practice for her grandson with CVI. Another wonderful podcast from Kaleidoscope by Jessica Marquardt.

http://thecvipodcast.libsyn.com/helping-river-read-judy-endicott-episode-8?fbclid=IwAR0odiH7Ld8UT9ODYz-EbP9OQrMty2uyGVDVUm7G5WdkQ2PXe656YPknCEo

How are you deciding?

The caseloads for TVIs are large and overwhelming. I have been a TVI for 40+ years so completely understand that. I think the danger in deciding the student with CVI deserves less direct and consult service than the student learning Braille is the problematic thing for me. It gives the feeling that the children with CVI are not really visually impaired. You know, of course, that is not true. That type of thinking is driving some states to mandate service to Braille students while writing policy to only serve student with CVI monthly and only in a consult model.

This shows a great lack of understanding of CVI as a visual impairment. It ignores all the building evidence of visual improvement due to visual neuroplasticity. We should be making service decisions based on children’s functional vision and based of children’s assessed need.

Dangerous stuff when we start separating students needs based on the location of the condition location: eye or brain. It limits the professional determination for direct and consult service based on assessed functional, individual needs. We do not determine service based on the fact that the child has an ocular or cortical/cerebral diagnosis. Not now, not ever and certainly not when the population numbers of students with CVI continues to explode.